Family of Horseheads man stricken with muscular dystrophy seeks help

Jordan McLinn, a second grader who has Muscular Dystrophy showed his appreciation for the president during the signing of the "Right to Try" bill. McLinn has been working towards this moment for years.
USA TODAY

Stacy Evans was seven months pregnant with her youngest son when she got devastating news about her oldest.

Alan Ramsay was 4 years old when his toddler sister started consistently beating him in races up the stairs, a development that struck Evans as odd.

A medical checkup led to a crushing revelation — Ramsay had muscular dystrophy.

Doctors predicted Ramsay would be in a wheelchair by age 10 and probably wouldn't live to see his 21st birthday.

He is now 34 and has surpassed all the early expectations, but a recent setback left him hospitalized and facing a bleak future.

Alan Ramsay, who has muscular dystrophy, enjoys a moment with his mother, Stacy Evans of Horseheads.(Photo: PROVIDED PHOTO)

And now his family hopes for public support to help with an avalanche of expenses.

"He had a very fortunate life despite everything they said, and lived a pretty normal life," said Evans, who lives in Horseheads. "Every day I pray and get frustrated. I said 'You can do this or do that, be as strong as you can and keep going. Don’t let it dictate your life.' I think people are positive in his life all the time as far as him not getting down on himself.

"Now it's a whole other story. This is the first time he’s ever really been sick," she said. "It’s pretty hard to see him going through it. It’s physically and mentally exhausting, and heartbreaking. Right now his life has been altered. He will learn to adapt to what’s going on, but it’s a real life changer."

An uphill battle

Muscular dystrophy is actually not one disease but many. The name refers to a number of ailments that cause progressive loss of muscle mass, resulting in weakness and often loss of mobility.

The most common adult form, type 1 myotonic MD, affects one in 8,000 worldwide, the Department of Health and Human Services reported.

Alan Ramsay, who has muscular dystrophy, has lived longer than his doctors predicted.(Photo: PROVIDED PHOTO)

Ramsay's diagnosis has changed two or three times over the years, Evans said.

In the meantime, he maintained a relatively normal lifestyle until around 2010, playing in sports, graduating high school with honors, dating girls.

Then all that started to slip away, and it was a painful process to watch, said Ramsay's sister, Magan Powell.

"Whenever I am having a really bad day, and I think like 'Oh my gosh, everything is falling apart, it can’t possibly get worse,' usually after a couple minutes of acting like a child and throwing a fit, I come back to reality and realize, whatever it is that I am going through, I need to remain humble and grateful," Powell said. "Because Alan and others in similar situations would give anything to have my 'problems' versus theirs."

Ramsay's mobility declined to the point he was permanently confined to a wheelchair in 2012.

Since that time, he has been on ever-increasing doses of narcotics to try and control the mounting levels of pain.

Still, he manages to maintain an upbeat outlook on life, something that amazes his sister.

"He has so much left to offer," Powell said. "He is intelligent, and kind, and funny, and even with everything he has staked against him, for the most part he always remains positive."

A family crisis

Despite serious health problems, Ramsay made it through his entire life without having to be hospitalized.

That all changed late last year.

In September of 2018, Ramsay developed what everyone thought was just a cold.

But in his weakened condition, that "cold" quickly deteriorated into respiratory failure.

In December, Ramsay was rushed to Arnot Ogden Medical Center, where he eventually had to be put on life support, and family members prepared for the worst.

Powell flew from her home in North Carolina to be by her brother's side.

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"I definitely was not prepared for what my two week stay had in store, between seeing my brother not being able to eat for over a week, having a feeding tube placed down his nose three times, and all three times it failed," she said. "Being in an uncontrolled amount of pain, being intubated twice in two days. I was trying to mentally prepare myself for Alan to die. Because for about 72 hours, our worst nightmare had become a reality."

Ramsay survived the ordeal, but he and his family faced some painful choices.

"He had to be put on life support. I wanted it to be his decision. I couldn’t make that decision," Evans said. "He was alert and could make his own decisions. Alan wrote down 'I don’t want to die.'

"I don’t think he realized what would happen. He thought he would beat this thing and come home," she said. "Everywhere you turn, you are up against a brick wall. Even having home nursing aides is an option, but Alan is very afraid to go with that. I’m scared to death, but I’ll do whatever I have to do."

Asking for help

Ramsay has a strong will to live, but that doesn't pay the bills.

His condition is stable, and Evans said that means insurance won't continue to cover his hospitalization.

He's ready to go home, but will need constant care, and the family is still struggling to figure out the best options.

"The medical system overall is really frustrating. It doesn’t leave a lot of time to sit down and think about what life is going to be like when he’s home," Evans said. "I go to work, come here (to the hospital), I go home and cook a quick dinner, go to bed and get up. It is what it is. Everybody pitches in and takes turns and we do the best we can.

"I've been been dealing with insurance companies, etc. They have a lot of stuff out there but you've got to know people," she said. "Sadly enough, I never realized how little care there is in this area."

Recognizing that nursing care, medical equipment and other expenses would quickly overwhelm the family, Powell set up a gofundme account hoping to raise $100,000 to help defray some of those expenses.

She said she had to do something because watching her brother struggle to perform the simplest tasks made her realize just how much she and most people take for granted.

Powell wanted to help lighten the load for her mother as well.

"It can help with some of the overwhelming financial expenses that are piling up and I know my mom is probably losing sleep at night over, trying to figure out how to get everything into place so we can get Alan out of the hospital and back home with his family (and two kittens) where he belongs," Powell said.

"This has been such an emotional roller coaster, one I wouldn’t wish for anyone to go through," she said. "Alan is a bright light in this world. We need more people like him, and to know him is to love him. And we’re all a little better because he’s a part of our lives."